At rest but not forgotten

A year ago, a friend died. We had known each other for over four years, but we had only met in person three times. Most of our friendship had been virtual and what began as part of my research into the ethics of clinical trials was to end one evening in a deep and painful sense of loss.

I had been expecting the email from her husband for some time. We all knew just how sick Joanna was, but, as is often pointed out by the bereaved, expectation does not forestall the shock when it actually comes. Her death had at least been peaceful and pain-free, surrounded by family, and I suppose that is all most of us can hope for, but she was only 62. Her cancer had been particularly exotic and pernicious and the end though slowed by everything modern medicine could muster was, I’m afraid, inevitable. And, now I feel so deeply saddened that we will never meet again. There was still so much to do and say and write, but a door was simply closed on our friendship. Slammed.

I had first tentatively contacted Joanna because of my professional interest in her father, Maurice Pappworth, who had in the 1960s been a firebrand in the world of research ethics. I wanted to write about him and I felt I needed her permission and that of his surviving family. After explaining what I wanted to do, I think she was quite naturally suspicious. Her father had been a highly controversial figure who had polarised those he met, and I suspect Joanna was anticipating a hatchet-job that would do nothing to serve her father’s memory. However, my intention was quite the opposite, feeling that history had been especially unkind to him and that his actions and their motives deserved a fairer analysis. I felt it was time for his contributions to be brought before a wider public.

Joanna agreed to meet me in London, on the steps outside the V&A, so we could talk about my project in the museum tearoom. I arrived early, which was a mistake, as the passing time only served to magnify my anxiety. History is comfortable when it is confined to dusty pages, but here was I about to meet the flesh and blood end of it. She was colourful when she arrived: red beret and bright purple coat and a lipstick that dazzled. She was a tiny woman and I towered over her, but she was unfazed for Joanna was only small physically. We spent a couple of hours in the V&A tearoom talking and eventually laughing about things. As we parted, I confessed how nervous I had been to meet her and she simply dismissed my silliness but allowed me to kiss her hand in thanks before we went our separate ways.

I wrote my first paper about her father’s work and sent it to Joanna and she in turn shared it with her two sisters. I honestly did not know what to expect. It’s easy to write about history in the abstract, where the characters involved might be thought of as nothing more than fictions. But here I was writing about a very real man, recently deceased, and his three children were reading my words. I was overwhelmed by the positive responses I received from Joanna and her sisters and my confidence was buoyed to carry on the project. I wrote a further paper and a book chapter and gave a number of talks about his work and I hope in a small way I have brought his name and his contributions back into the ongoing discussion of the ethics of clinical research.

But, I had only written about her father’s role as a whistle-blower, exposing unethical clinical research. As part of my research, I had also interviewed his former students who held him in nothing short of awe, and his secretary, a remarkable woman called Helen Bamber. She attributed much of her own later success in the fields of international human rights as having their origins in her conversations with Pappworth. What was emerging was an even more interesting story, only fragments of which were widely known.

I was one of the people to encourage Joanna to write her own memoir of her father, realising that her perspective as his eldest daughter would be unique. She completed the manuscript in the weeks before her death and kindly sent it to me to read. My last email to her a couple of days before the end was to tell her just how well she had told the story.

It was a beautifully crafted piece of work, successfully blending together her family’s personal history with a fiercely objective analysis of her father’s professional life. As a result, she sculpted a three dimensional portrait of the man. It might have been easy, as his daughter, to paint either a simple loving or an equally simple hateful portrait, but Joanna offered the reader an unsentimental narrative, that rang true. His professional story was familiar to me, but most of the back story was not, and the way she wove that into her narrative provided much needed context for the man, his attitudes and his actions. I found the moments when she offered her own personal reminiscences of her father especially poignant, and one of the biography’s greatest strengths. No one else could have written such a memoir and I was delighted that she had. However, it is part of my sadness that I’ll never know if she read my comments on it.

With a death, our thoughts must naturally turn to those left behind, to Joanna’s husband and her children and her sisters. But, there is also the matter of legacy, especially if we have an eye on history. Joanna was a daughter, a sister, a wife, a mother, an academic, a teacher, and, for me, a friend and through all those roles she was an inspiration, touching those she met and worked with in many ways and it is our collective memories of her that will abide.

People, of course, only die if they are forgotten, and no one, I expect, who ever met Joanna will forget her. I will never forget her warmth and encouragement, her impeccable manners and her hospitality even when she was gravely ill. And I will never forget the debt I owe to her and her family.

Rest peacefully, Joanna, but in your sleep do not expect to be forgotten.